Two days to last a lifetime

Two days to last a lifetime

I think I slept for about an hour, maybe two, that night, in a handful of short bursts. Briony was kept in the normal delivery room overnight for observation. I slept in fits and starts in the chair next to her, cuddling Henry, putting him back in his cot, nodding off, waking up, picking him up for a cuddle, putting him back, nodding off, sleep, wake up, repeat.

I went back and forth to the Ferndale Suite a couple of times in the night, and on one of those occasions I bumped into one of the dads from our ante-natal class – I recognised him instantly. This was going to be one of those awkward conversations that having a bereavement suite can protect you from. A REALLY early lesson in how to paint on a smile and act like everything’s normal when your heart is in your bootstraps and your world has crumbled around you.

“How’s everything going?”

“Not great, they are getting ready to emergency transfer us through to Leeds…”
I’m thinking ‘Oh shit. That’s not good, you poor things, god I hope everything’s okay. I really feel for you.’ Then reality – or was it the devil on the other shoulder? – came crushing back in shouting at me “Hang on, Henry’s DIED and you’re feeling sorry for THEM?”

So now I’m really distracted as the angel on one shoulder is saying I can still empathise with their situation and the devil on the other shoulder is questioning me thinking about anything other than ourselves.

“…how about you guys?”

“Sorry?”

“Our ambulance will be here any minute, but how’s everything going with you two?”

Poor guy, I think that got him like a kick to the stomach. I never did hear what happened to them. I really hope everything worked out okay for them.

Harrogate Hospital, like a lot of hospitals in the UK now, had a cold cot. For those of you who don’t know what cold cots are, they’re designed to keep your baby’s body cool to slow down the deterioration process so that you can spend more time with them.

Sorry, this next section is going to be a bit technical.

There are actually two in Harrogate – one made by Flexmort, who are the main manufacturer, and one that had been donated previously. The Flexmort ones are designed like cool pads that you wrap your baby in and cold water pumps through them. So these are set up so the pad can be put between blankets, etc, so it works while you cuddle your baby. We didn’t have the option of this one, I can’t remember why.

The second one was more like a big wooden cot on wheels, but metal-lined, which was then plugged into the wall causing the metal to cool down. So it was basically a cot that doubled as a freezer tray. It kind of looked a bit like a coffin actually. It sounds horrific but it was an absolute godsend. The only downside compared to the other sort was that it wasn’t hand-held, so it meant we could cuddle Henry for a while, then we’d start to feel his body warm up and we’d know we had to put him back in the cold cot for a while to cool back down. Doesn’t sound like a great option, but hell it means more time with our boy, so that makes it the best option in the world. That big wooden cot-cum-freezer-tray gave us the best part of two days that we otherwise wouldn’t have had, so it’ll always be wonderful to me. It did look a bit ugly though, looking back on it. I didn’t see it like that at the time though – I couldn’t be more grateful for having had it. It even fitted a Moses basket in.

So what do you do in that position? How do you use that time? How can you ever hope to squeeze a lifetime of memories with your child into less than 48 hours? If you have living children, just try and comprehend that for a moment. You can’t? Too right. Neither could I at the time. I didn’t think about it that way – I think the enormity of that would have swallowed us up if we’d tried. Just make the most of the time you’ve got, that’s the way.
So that’s what we did. A lifetime of cuddles in two days. Seventy-six photos. Some hand prints and footprints.

And, gift to end all gifts, we were given our Our Angels memory box. Losing your baby is the single most isolating experience I’ve ever come across. Getting a memory box means so much on so many levels:

It means you have something tangible with you to help you make memories.

It gives you something to take home to validate your child’s existence.

It means you don’t have to walk out of the hospital with nothing in your arms.

And on the deepest level imaginable, it sends you a clear message – “You are not alone”. When this happened I felt like we were entirely on our own, like we were the only people this had happened to.

Like I said in Blissfully Unaware, this stuff doesn’t happen in the developed world or in the 21st century, surely? This is something that happened a couple of hundred years ago?

That box was a real, physical representation that not only had this happened to other people IN OUR TOWN, but that they had survived, they’d got through it, and they’d been able to channel their grief into giving US (people that they hadn’t met) this box to help us at the start of our journey.

It’s a pretty unassuming box, just a simple cream colour, with a ribbon securing it at the side. We weren’t really sure what to do with it when it was first given to us. Our baby’s dead and you want to give us some kind of scrapbook-cum-storage device? But then when you realise what it’s all about, I think it’s hard not to embrace it! I’ve learnt over time that it’s important to have some things in this box but also for it to have space, as a counsellor friend of mine described it, to create ‘living memories’.

So – a little heart-shaped candle, an angel Christmas decoration, two little teddy bears, a blanket.

Then we added things over the course of the couple of days, and have continued to do so ever since:

Henry and Bri’s hospital wristbands.

A tiny little bag with a folded swab that contains a few tiny locks of Henry’s hair – priceless little pieces of his DNA to keep forever.
The tissues with blood stains from where his nose bled a little bit.
The tape measure Amanda used to measure his height (you can see where we marked his height on it in pen).

The baby grow he wore. He only ever wore two, one in hospital and one that he was buried in. This one says ‘Baby Bear’. The other was navy blue with a big star in the middle. The team that organised Henry’s funeral were amazing (I’ll talk about it and them later), but my ONLY regret was that they washed that baby grow. I wish they hadn’t. Call me crazy but I wish I could hold that baby grow and still smell him on it.

Then we added his handprints and footprints that Amanda took oh-so-carefully, and his little card with his measurements on it.

Later we added hard copies of the photo of the three of us taken very shortly after he was born, and his stillbirth certificate (more on that process later). All his baby scans and copies of the order of service from his funeral.

That little black strip of tape? – electrical tape which doubled as a black armband the first time I refereed rugby after Henry died.

What’s gone in there since? All the sympathy cards we received. All his birthday cards. The helium balloons that we’ve taken to his grave each birthday. Some of our cat Lawrence’s hair (he’ll get a mention later too) and a paw print his vet took for us after he passed away. A pair of red and blue striped socks of mine, ‘retired’ from use before they fell apart (we had bought Henry a pair of red and blue striped socks, so that’s become “his” colour scheme).

Our Angels memory boxes now contain two keyrings – one for each parent – from the wonderful Heart in their Hand Project, one of the most beautiful keepsakes I’ve ever seen. The cut out heart from the middle of the keyring is fixed to the backing card so that the parents can keep the keyring and the heart can stay in their baby’s hand.

We didn’t have them back then, so one of our hearts is in his memory box, and the other is pushed into the ground at the base of his headstone.
Our Angels are always looking at new ways to add to or improve these boxes – new keepsakes and things like that are coming out all the time as more and more parents sadly join the baby loss community, and it becomes more socially acceptable to talk about your loss and do things publicly in your child’s memory. Some memory boxes have clay kits for hand and foot moulds, and all sorts of other things too.

These memory boxes are that most tangible recognition of the existence of your child. They mean everything. If our house was on fire, I’d save Briony, Abby (our cat) and that box.

Oh and some of you might have been wondering – why TWO teddy bears? One stays in your memory box, one goes with your baby. Henry is buried with one of his two bears, we will forever have the other.

So we stayed all day Saturday, alternating between cuddling Henry and holding each other, in our safe ‘bubble’ of the Ferndale Suite. Flipping between smiling at how beautiful our son was and crying at how not-alive he was.
Honestly, most of the time he just looked like he was sleeping. He had some slight redness around one of his eyes and a slight distortion with his skull, but at a glance you’d have thought he was just asleep, holding his two little bears – or our fingers – so tightly.

What else happened in that day and a half? Dr. Amin came and did our post-mortem consent. We hadn’t actually discussed it before she came in, but we both just knew instinctively that we’d have a post-mortem done. There’s a risk for parents of stillborns here, around 40% of post-mortems come back inconclusive or unexplained. Even without discussing, just telepathically I suppose, we both knew that we’d want to know if there was anything that caused Henry’s death, anything we might need to know for the future when trying for a little brother or sister for him.

The post-mortem consent process is very paperwork-heavy, just lots of forms and signatures. Sign here, initial there, tick that box to say you understand that, cross there if you don’t agree to the information being used for this or that. Dr. Amin explained it all to us very gently, very compassionately, very well. I’m not sure we took it all in, but we took enough of it in. See you in 6-8 weeks to hear back on that (stay tuned!).

On Sunday morning I think we knew that we had to get ready to say our final goodbyes. There was an unspoken agreement or joint realisation that, much as we wanted this time with Henry to last forever, we couldn’t just stay there with him day after day. So we started mentally preparing to go home, empty-handed, without our son.

I forget which midwife was on duty on the Sunday late morning/lunchtime (not Amanda) as we said it was time for us to go home. There was no pressure on us to go. It was just the right time – no, there’s never a RIGHT time to leave your child behind for ever. It was just the appropriate time.

There were a couple of minor hiccups as we were getting ready to say our final goodbyes. We’d said we wanted Henry to go first (down to the mortuary). That way we weren’t turning our backs on him, we weren’t walking away from him, we weren’t leaving him behind. I’d asked how he’d be taken down to the mortuary, and they said they had a bag.

I instantly had images of our son being carried through the hospital corridors in some sort of sports holdall.

What if someone bumped into whoever was taking him by mistake? What if someone accidentally clipped the bag with a wheelchair (you know what those hospital wheelchairs are like, they’re right up there with supermarket trollies)?

I refused. “I want him taken down in the cold cot. It has a lid. That’s how he should be taken down. It’s solid and secure.” They agreed without hesitation.

So there we were in the Ferndale Suite, us and the midwife, I think Dr. Amin may have been there, but I’m not sure. The maternity support worker who was taking Henry down to the mortuary came in. She said (and this will be seared on my memory and on my very soul for ever) “Shall I take it now?”.

IT? WHAT THE HELL DO YOU MEAN “IT”? That’s our SON. He’s a human being, he’s not an “IT”. He has a FUCKING NAME! We both crumpled. It took all our strength just to hold ourselves up. I couldn’t even bring myself to respond. Those of you who know me well know that it’s pretty rare for me to be lost for words. I was speechless, absolutely incandescent with rage.

So we stood there (or maybe sat on the end of the bed) and just held each other. I don’t think I’ve ever cried like I cried in that moment. And then, he’d gone. Now it was just the two of us, sat in this soft-furnished hospital suite that was the only home our son ever had – not even that he’d ever known, just that he’d had. They gave us a few minutes.

We collected ourselves, dusted ourselves off, looked each other in the eye again and once again made that unspoken pledge to stick together like superglue. Then we packed everything away into a couple of bags (and a memory box), said our goodbyes (and hugs) to the incredible midwives, and headed out the door.

Now we were out of the bubble. Now we’d find out what real life without your child would be like. Down two floors, and back along the corridor to the main entrance. As we approached the main entrance, the maternity support worker/nemesis was coming back along the corridor towards us pushing the cold cot – on her way back from the mortuary. So that was it. Son dropped off, back to the unit, the world just carries on.

All I could think as we walked towards her (a bag over one shoulder, another in one hand, memory box under my other arm) was “please don’t acknowledge us, just let us walk out with our thoughts and our anonymity. No-one on this corridor knows we’re the ones with the dead child and you’re pushing an empty cold cot that looks like a coffin. Please, please, don’t say anything to us.”

Big smile – like seriously, MASSIVE grin. Big exaggerated wave. “See you later you two!” – wait WHAT? See us later? Like you work in a shop and we just popped in for our daily paper and a pint of milk and we’d be back same time tomorrow?

These were two tiny blips in what was three days of truly outstanding and incredibly compassionate care from an entire department. And yet, they’ll always be etched onto my memory. It’s important to say I am sure this lady meant no harm. I’ve said in previous posts that it’s a devilishly difficult tightrope for midwives, and that applies to maternity support workers and others who come into contact with bereaved parents in their darkest hours too. Guidance, support and training for ALL these professionals (not just midwives) is so, so important to help them get it right. You only get one chance to get it right for each family.

And then we were out of the hospital. Into the fresh air for the first time since Friday morning. What the hell do we do now? Well, we get in our car and we go home and see the cats.

How do we adapt once we get home to our home with its nursery all ready to go? Well, we’ll just have to make that up as we go along.

That’s one thing I learnt very quickly and I’ve continued to learn over the last three and a bit years. There’s no rule book for this journey. No set way to do it. No chapter in the parenting books about how to parent when your child doesn’t come home with you.
You just make it up as you go along. You do what you have to do to get by.

Some days just surviving to the end of the day is enough. Just keep swimming…

7 thoughts on “Two days to last a lifetime”

Thank you for sharing your most intimate and devastating journey. I am a prospective student midwife who first met you at a screening of Still Loved. Currently I am completing a project for my access course on infant loss and stillbirth as I want to be prepared to make a difference when it matters. You are inspirational and I will always remember you and little Henry (I have a pine cone you gave me on my dressing table) in years to come and hopefully I will be able to support and care for families in the future. Thank you again for sharing. Xx

Awww bless you, I too have lost a baby … mg daughter was 22months when she passed away, she was born very poorly and spent most of her life in hospital fighting to stay alive ….. you sound like you are both a great couple and together you will learn to live with this….. no words will help take your pain away, just know that you are not alone and Henry will live on forever in your hearts xxxx

So painfully but beautifully eloquent. You are both such wonderful parents to share such a tragedy; selfless in the face of absolute adversity. Your beautiful son will never be forgotten.. you two fabulous people will never be forgotten..you have enlightened the world, to change practice in the most devastating of circumstances. Thank you for your courage..xx

There are midwifery and support staff who will learn from your loss, so eloquently and bravely written. I’m so sorry you lost Henry. We lost our first grandchild at 23 weeks – Cooer had a little life, but he is never, ever forgotten.

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This is how I let a most unforunate loss affect me, but not negatively. I made a choice to pay attention to the signs and understand why they were there. This is my perspective of a series of ironic events that changed me, and gave me knowledge.